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With the rush of newsletters and e-blasts that reached our inboxes on May 1st you may have been overwhelmed by the abundance of information about ways to participate in Celiac Awareness Month (CAM). Maybe you told yourself you would read them later or pick an activity to celebrate Celiac Awareness Month when you had a free moment.

For those of you who feel like May has been slipping away at lightning speed, fear not! Here is CC Gluten Freed’s guide to participating in Celiac Awareness month mid-May.

Whether you want to do something BIG and involved or just a small act to participate in Celiac Awareness Month, this guide will help you find an activity that fits your needs!

1. Be an advocate!

The best way I can think to celebrate Celiac Awareness Month is by advocating for yourself and making concrete change to improve your community. Be an activist this month by persuading a local business to start offering gluten-free options or receive training by NFCA’s GREAT Kitchens program, GIG’s Chef-To-Plate program or simply talk to the manager about what changes s/he could implement to make the restaurant a safer experience for you!

In a couple of weeks I will post my experience talking to a local restaurant about gluten-free options and post resources for you do try it yourself! If you are going to talk to a local restaurant I suggest printing out materials with specific suggestions and information about gluten-free cooking practices and cross-contamination.

2. Attend a Webinar

A great way to celebrate CAM is to educate yourself about your diagnosis or your gluten-free lifestyle. Webinars are a useful and free way to learn new information! The National Foundation For Celiac Awareness offers webinars regularly that will keep you informed about the most up to date information about celiac disease. Don’t see one that interests you coming up? No worries! NFCA keeps an archive of their webinars that you can watch! Check it out here.

Connect with the gluten-free community on twitter! This is an easy and fun way to participate in CAM. Start using #glutenfree or #celiac when tweeting and see how engaged and connected the gluten-free community really is. Members in the GF community will retweet you or respond to the tweets you blast off.

Check out CC Gluten Freed’s Calendar for May and June. Start planning now and you can make it out to the CDF’s Annual National Conference and Gluten-Free Expo on June 7th and 8th. Washington DC also has a gluten-free expo on June 8th! These events are super fun and delicious (you will be stuffed after sampling all of the amazing products from the vendors at these events).

You can also rely on resources from NFCA and CDF to participate in Celiac Awareness Month.

By signing up you receive a Team Gluten-Free t-shirt and a Team fundraising page. You can post updates about your 7-day gluten-free meal plan on your page as well as on other social media sites (use#tgfchallenge on Twitter!)

CCGF twist? Have a friend or family member sign up for the challenge! This gets more people involved in CAM and spreads the word. This is a great way to educate a friend or family member. In my experience, the only way to fully understand what it takes to live gluten-free is to try it out! If you feel like friends or family don’t understand you or lack empathy this is a perfect, non-confrontational way to ask them to test out being gluten-free!

National Foundation For Celiac Awareness:

NFCA will send you a CAM toolkit that has weekly themes for the month of May focused on increasing awareness about celiac disease via education! The toolkit is a great resource for educating yourself as well as friends or family. You also receive some great recipes as an added bonus!

NFCA also posts a gluten-free product of the day on their awareness month page! Keep track of this site if you are curious about new gluten-free products on the market.

One of the silver-linings of living gluten-free is the amazing community you become a part of. May is an opportunity to really engage with the gluten-free community! No matter what you decide to do, every small action made by members of the gluten-free community aggregate to form a united, important impact!

For many people living with Celiac Disease, having Celiacs and being an advocate for awareness often times are synonymous. We are a demographic of people who cannot eat one of the most commonly consumed foods: bread. So, naturally, when people come across a Celiac for the first time they have a lot of questions. Wheat has played an incredibly large role in our political, religious and culinary histories. As a result, it may seem pretty odd or even unbelievable when you encounter a person biologically designed to reject it. Whenever I meet someone who has not heard of Celiac Disease or the gluten free diet I am unfailingly asked one of three questions:

What is gluten???

So…what happens to you if you eat bread?

Celi-what disease?

It is important to be able to answer these questions coherently and knowledgeably. Why? Because otherwise the gluten free diet gets a bad rap! If people living with Celiacs or gluten intolerance do not speak up, the media and fad-dieting celebrities control the narrative about what it means to be “gluten free”. That being said, if you have Celiac Disease or gluten intolerance, what should you know??

A Celiac in the know should have a basic and celiac-specific understanding of Physiology, Plant Biology, Biochemistry, Immunology and Genetics. As a Science teacher and GF blogger it is about time I merged my two favorite things into a blog post! I won’t be offended if you simply skim the rest of this post because things are about to get a bit nerdy🙂

Physiology

Physiology is the study of biological functions eg how the digestive system functions. Given that Celiac Disease is a digestive disease it is important for us to know how the digestive system works! The purpose of the digestive system is to digest and absorb. There is a common misconception that people with Celiac Disease struggle with digestion but this isn’t really true: we struggle with absorption.

For example, someone who is lactose intolerant cannot digest dairy products, their body cannot break it down. Celiacs are great at breaking things down, in fact, we have a whole class of biological soldiers (antibodies) that attack gluten. If this were merely a matter of digestion, the symptoms of Celiac Disease would not be so varied and at times debilitating.

Digestion is the process of breaking down food into biologically usable parts. Your cells don’t need pepperoni pizza, they need glucose, amino acids, vitamins and minerals etc. The digestive process transforms food into these usable components. Once the food is broken down (aka digested) it will reach your small intestine, which is where the absorption takes place.

Your small intestine is lined with villi, finger-like projections that absorb those usable components from the food into the body/blood stream. When the villi are damaged they look stub-like and can longer efficiently absorb nutrients. Someone with Celiac Disease may eat an incredibly healthful diet and yet not receive the benefits of those foods because their villi are damaged! Luckily, the villi can repair themselves overtime which is why living gluten free can often reverse almost all of the pre-diagnosis symptoms. For example, I went from being severely anemic to having normal iron levels about five months into being gluten free.

Plant Biology

How many times have you answered the “what is gluten” question with “You know…bread, pasta, cookies, anything with flour…basically.” Although that simplification may be best in some contexts, it is still nice to know what it really is! Gluten is a group of proteins that is responsible for the elasticity of dough aka the chewy goodness that I sometimes miss so much. Gluten is made up of two proteins: gliadin and gluteninin (gluten = gliadin + glutenin). Interestingly, Celiacs are only sensitive to “gliadin” but for whatever reason we use the term “gluten-free” to describe a diet that is not harmful to people with Celiac Disease.

Did you know that wheatgrass is gluten free? The wheatgrass is immature wheat. Though the same origin, Triticum aestivum L., the grass forms before the grain and does not contain the harmful proteins we discussed above. NOTE: if you buy wheatgrass make sure it is labelled gluten free because otherwise there is a risk that the grass has been contaminated with the mature grain.

Biochemistry

The very first day of my Biochemistry class in college my professor warned me that I would have to memorize the structure and names for all 20 amino acids used in the body to form proteins. Don’t worry, these structures didn’t make my list of things Celiacs should know but the basic concept that proteins are made up of a string of amino acids definitely made the list.

We know if you are Celiac you need to be gluten free. We know that gluten is made up of two proteins and Celiacs are mostly sensitive to gliadin. So what is it about the protein called gliadin that is harmful?

A protein is made up of a string of amino acids. The sequence, or order, of these amino acids is what determines what type of protein it is. There is a specific part of gliadin, a sequence of 19 amino acids, that trigger the autoimmune response in Celiac patients. Proteins with similar sequences, even if not exact, can cause reactions as well. This is why people with Celiac Disease typically cannot eat rye, barley, malt and sometimes even oats because the amino acid sequences can cause a reaction!

Immunology

The immune system has two parts: innate immunity, the body’s first and more generic line of defense, and adaptive immunity, our specific response. When it comes to Celiac Disease we are mostly interested in adaptive immunity because it is this part of the immune system that is triggered by gluten.

In someone with Celiac Disease, the body perceives gluten as a threat and produces antibodies to attack and eliminate it called Anti-gliadin antibodies (also called AGA). You probably recognize that word from the tests you were given for your diagnosis. Some doctors will test the blood for the presence of AGA in order to determine if someone has Celiac Disease.

Why does it matter if the body creates an antibody specific for gluten? Doesn’t that just mean that the gluten is attacked? The immune system is very complex and yet imperfect. Autoimmune diseases are conditions where the body’s defense systems begin to attack healthy cells. In Celiac Disease, the Anti-gliadin antibodies end up attacking the lining of the small intestine (among other areas in the body), damaging the ability of the villi to absorb nutrients.

In short, the immune system creates specific proteins that target foreign and unwanted invaders in the body. People with Celiac Disease develop antibodies in response to consuming gluten that attack and destroy healthy cells in the body causing damage, inflammation and symptoms of Celiacs.

Genetics

The reason it is important to understand the genetic aspect of Celiac Disease is all about getting people tested. If you or a family-member are diagnosed with Celiac Disease it is really important that the rest of the family get tested as well. If a family-member has Celiac Disease, your chances of having it are much higher than the average person in the general population. Family-members may be asymptomatic or may have symptoms that have been misdiagnosed (I used to have a juvenile arthritis diagnosis on file before going gluten free).

I can’t tell you how many of my readers have told me that they found out they needed to be gluten free because a family-member was diagnosed first. My grandmother found out she had Celiac Disease after I was diagnosed and has experience improved health since going gluten free! There is no way to get around the fact that Celiacs is genetic. I know many families that are resistant to getting tested because they do not realize that they have a risk of having or developing Celiac Disease.

Being in the know is not just important for spreading accurate awareness, it can actually help you stay motivated. When you understand what happens to the body on a molecular level in response to even trace amounts of gluten you may find yourself even more committed to taking those extra steps like avoiding cross contamination to be completely gluten free.

What a day for Celiac Awareness! The web is all a buzz with Gluten Dude’s latest post about a Disney television show plot line where a gluten free character is bullied, mocked and, in my opinion, assaulted. The Disney Channel show “Jessie,” aired an episode guest starring JJ Totah who plays Stuart. Described as a”9-year-old smart wiz boy” by Wikipedia, Stuart encounters some rough moments in the episode because he is gluten free.

In the episode with the controversial scenes about gluten, Stuart is attending a sleepover at his friend’s house only to find that his dietary needs are mocked and undermined. Here is the clip posted by Gluten Dude:

I think it should go without saying that these scenes are abhorrent; however, if things simply go without saying, then I am out of a job! I cannot believe that Disney would target such an incredible community: the Celiac Kid community.

Anyone who has met a Celiac kid will surely have left with a strong and lasting impression. When I led the Celiac Disease Foundation’s youth events at last year’s conference I was blown away by the maturity of these kids. Celiac kids are articulate. They are persistent. They advocate for themselves. They read labels that took me years to master how to decipher. They explain complicated things to grown ups on a regular basis!

Imagine being the one kid at the birthday party who can’t eat the cake. The one kid who is left out of the pizza party that his class won for selling the most magazine subscriptions. The one kid who reads labels on Halloween candy before trading with friends. The one kid who had to ask the waitress questions about an order. Celiac kids are constantly singled out and must learn adapt to complex social situations at a very early age. We are talking about children who may have spent years sick, weak and tired who have finally discovered what it feels like to be strong and healthy but, the cost to their new found health is a brand new life that seems counter to what all their friends at school experience.

We know the Celiac Kid community is fantastic and it isn’t fair of Disney to target such an inspiring group; however, my criticism of Disney goes much further than simply targeting a great group of kids.

Disney is incredibly litigious. They do not care how big or how small you are, if you infringe upon their copyright they will get you. Why? Because they care about what products, what people and what words have the Disney name. They care deeply about the quality of products that say “Disney.” Given this fact, I take extra offense to the absurd display of ignorance and bigotry in their episode of Jessie. Someone at Disney brainstormed the concept, someone wrote the script, someone read the script, edited the script, practiced the script, recited the script, filmed the scripted being read and then edited the film and not once in this process did they stop to think that maybe there was something wrong with the idea of bullying a child with a gluten-related disorder.

B) Find an episode of child’s television show post-1995 that has a plot-line where a child with a food allergy is attacked by bullies using the allergen. I promise you, you will not find a show where some low-life bully spreads peanut butter on the peanut-allergy kid’s desk without his knowing. You know why? Because it isn’t funny. There is nothing funny about children being in pain.

The thing that gets to me the most is the part of the episode where a child throws glutinous pancakes at the gluten free character. If someone threw anything glutinous at me on purpose, I would lose it. Honestly, I think that should be considered assault. Kids cannot think it is ok to play with allergens or bully kids using allergens when Celiac Disease or anaphylactic allergies are involved. If it seemed funny on the show, it will not seem funny once it happens at a real school, with real students and real health issues. It is so incredibly irresponsible of Disney to treat food allergies and the like so flippantly.

Disney is a huge huge company. It is going to take more than Gluten Dude’s blog post and CC Gluten Freed’s post to make them truly listen. There is a lot of buzz on Facebook and Twitter and there is an electronic petition going around to get the episode removed from the air but in order to get a reaction we need to make some more noise.

The Celiac/gluten free community is so connected and passionate. We need to act together to get a sort of Celiac catalyst effect going. May is Celiac Awareness Month and it is time we start spreading some especially given the nature of this issue. This episode is out there and our kids are watching it and forming opinions about the gluten free community and how they should relate to people who are gluten free (or have any other food-restriction, for that matter).

Readers, please don’t feel discouraged or blood-boilingly angry about this! We are so lucky to be a part of such a great community that advocates for itself. We can support each other and, probably most importantly, support and protect our Celiac kids! I know a lot of gluten free moms, dads, aunts and uncles (mine included) that want awareness efforts that specifically help the younger Celiacs live healthy and happy lives!

This year I am taking Celiac Awareness Month a little more personally than years past! In March, I went to the Digestive Disease National Coalition and met with Senators to discuss Resolution 550 that officially makes May National Celiac Awareness Month.

When talking with the Senate staff I explained that making May Celiac Awareness Month gives members of the gluten free community a great jumping off point for awareness campaigns and projects. For example, the Gluten Intolerance Group implements their Chef-To-Plate program every May that gets restaurants to display information about the gluten free diet at their establishments. NFCA’s Fuel the Family program will share family stories from the gluten free blogosphere, daily gluten free product spotlights and will be promoting a Wear Green Day! The Celiac Disease Foundation has their annual Gluten Free EXPO on the 4th and 5th of May in Pasadena, California.

We don’t need to leave all the work to the nonprofits though! There are plenty of small projects and actions you can take to promote Celiac awareness during the month of May.

I want to practice what I preach by using May as a jumping off point for my awareness efforts. Any increase in awareness, no matter how small, can make a big difference in the lives of people living gluten free. How many times have you been at a restaurant when the waiter happened to know all about the gluten free diet and cross-contamination because he knew someone who knew someone? Although there is no instant gratification when it comes to promoting awareness, our collective work really does make a difference!

I know we are all busy; however, below is a list of ideas that won’t take up too much of your time but can still help you promote awareness. Items on this list should be able to fit into the busiest of schedules. For example, I am a first year teacher at a turnaround school in the DC Region, I am taking the MCAT on May 11 and I am applying to medical school in June but I will be doing the items on the list with asterisks* next to them.

1. **Facebook Banner – if you are a member of any type of group that hosts events I am sure you have been asked to change your profile picture or banner to promote events. When I was an undergraduate, my professional sorority used to make it a “sister-requirement” to change our profile pictures during Rush. This is a simple yet super effective way to promote awareness and it only takes a few seconds! You can design your own banner or picture to display or go to this website for some pre-made banners promoting awareness!

2. **Buy a few Gluten Free shirts and wear them every Monday for the month of May (or any day, I just liked the alliteration) Here are some of the shirts I bought for May 2013. If you want to go the extra mile, buy some GF swag for family members too! I know it seems excessive but I really did order all of these items…there aren’t many perks to being gluten free, at least we have cute clothes!

3. **Pinterest Challenge – I am going to post one picture to Pinterest every day for the month of May that will promote awareness. This is my goal for Celiac Awareness Month. I will keep you all posted with my updates!

4. Twitter – Commit to tweeting about gluten free experiences during the month of may. You can post about restaurants you go to, foods you make, people you meet, anything just keep the posts coming!

5. Blog – Last May Gluten Dude updated his blog every single day for the month of May. This is way too big a time commitment for me but if you can do it then more power to you! It is great for boosting your creativity. In order to get ideas to write about you might end up doing some research and learn something new yourself!

7. Make a basket for a friend – Reconnect with members of the gluten free community by sending them a basket! Maybe you met someone at the last gluten free expo you attended or maybe you exchanged business cards with a random gluten free person you met last week or maybe you attended a gluten free support group meeting a year ago and still have some contacts. Follow up with these connections and send a little GF goodie basket!

8. Go to an event – Check out this website that lists gluten free events going on around the country. Find one near you. You can also check out websites that list Celiac and/or gluten free support groups. Attend a meeting! You can also go to http://www.meetup.com and find a MeetUp group in your area that connects gluten free locals.

9. Bake GF cupcakes for your coworkers – What better way to explain about the gluten free diet than by giving people delicious treats? This is a great way to get your coworkers to be more supportive of your lifestyle. If you can, make the frosting Green. Here is a great recipe for Tiramisu cupcakes. Here is a review of a great GF all-purpose flour so you can convert fun recipes you find online.

10. **Get friends and family involved – The best way to really understand what it is like to live with Celiac Disease is to actually try being gluten free for a day. Have a friend or family member order gluten free while dining out for a week even if they aren’t celiac. When I first started to show signs that I was struggling with being gluten free, my uncle decided to try being gluten free to see what the problem was. It then became clear to him how challenging it truly is. Cross-contamination issues, awareness issues, dining out, social problems that arise because of being gluten free are all among the list of challenges that people with Celiac Disease or gluten intolerance face. These issues are pretty invisible to the average Joe, so get your family or friends informed by teaching them how to live gluten free, even if just for a week. The only way to truly get it is to live it.

When I moved to Washington DC to teach 7th grade Science I never thought that I would end up in the offices of Senators and members of the House promoting legislation that will benefit the gluten free community. Advocating for the gluten free community is one of my greatest passions, it is why I started this blog, go to events and volunteer for many of the gluten free and/or Celiac nonprofits in the United States, but I never thought I would have the ear of the US government.

The Digestive Disease National Coalition held its annual public forum, uniting people from across the digestive disease spectrum for one cause: get our needs on Congress’s radar. DDNC held multiple informational lectures on Sunday preparing the volunteer advocates for our day on the Hill. Sunday night ended in an amazing Welcome Reception. I never expected to worry about over eating at a Digestive Disease event but the food was incredible and 100% gluten free despite the fact that Celiac Disease is only a small subset of the overall coalition. Katz provided the gluten free desserts as well as toast and muffins for breakfast the next day.

The Digestive Disease National Coalition unites people advocating for the treatment and prevention of conditions ranging from colorectal cancer to pancreatisis to gastro paresis to Celiac Disease to Chrons and much much more. The showing of volunteers was truly inspiring because we had policy makers, presidents of nonprofit organizations, patients and the families of patients all working together to promote legislation that will help cure, treat and prevent digestive diseases. I met cancer survivors who showed up to support people still fighting for their lives. I worked with people who were physically exhausted by the end of the day because they are living with serious chronic illnesses. The solidarity demonstrated by the digestive disease community is something to be revered.

Although I am from California, I was representing the state of Maryland today, my current residence. I was happy to be with Team Maryland because Marilyn Geller, Chief Operating Officer of the Celiac Disease Foundation, was here representing the political needs of Californians living with Celiac Disease. Alice Bast, president of National Foundation for Celiac Awareness, was here representing Pennsylvania along with a small cohort of other members of NFCA. I was very proud to be a part of the Celiac cohort present at DDNC.

DDNC divided our coalition by state, forming teams of around six people. The teams were responsible for planning what would be pushed for during our meetings with Senators and Representatives and had to elect a team leader to facilitate the discussions. I was elected leader for Team Maryland which was both humbling, terrifying and exhilarating.

I met with the offices of Senator Mikulsi, Senator Cardin, Representative Ruppersberger and Representative Van Hollen. The main goal of our visit was to push for an increase in National Institute of Health funding from $31 billion to $32 billion. Honestly, it was an easy sell given the fact that the people I met with were democrats, on various health committees and the NIH is located in Maryland so its funding directly impacts the state by increasing jobs in the health field.

You may be wondering what can Congress do for someone living with Celiac Disease. That is a fair question, unlike many diseases and conditions out there, Celiacs doesn’t have a very long or involved legislative agenda, something the gluten free community hopes to change in the next few years. However, there are a few issues that are pretty significant: 1. Gluten Free Labeling Laws 2. National Celiac Awareness Month (May)

Currently, the gluten free labeling bill is being reviewed in the Office of Management and Budget which is great. It should get sent back to the FDA soon for approval. The main issue I focused on in my Congressional visits was the declaration of May as Celiac Awareness Month.

In a time when budgets are tight and sequestration has broken the hearts of many members of Congress, pushing for meaningful legislation that doesn’t cost Congress a dime is pretty heart warming business. There is no reason for Congress not to proclaim May as National Celiac Awareness Month; however, there is a risk that this issue gets overlooked given the complicated political climate. My goal was to get this House and Senate Resolution on their radar.

In addition to helping people currently diagnosed with Celiacs or gluten intolerance, declaring May as an official Celiac Awareness Month can help us increase the number of accurate diagnoses. This is where I got the attention of Congress: misdiagnosed Celiac patients are a drain on the economy. Before diagnosis, many Celiacs see close to ten physicians, racking up medical bills. Additionally, they are usually prescribed medications to treat symptoms that could be completely eradicated by following a gluten free diet. They undergo expensive procedures like endoscopies, blood tests, colonoscopies etc racking up more and more medical bills, potentially going into debt. Furthermore, undiagnosed people tend to be very sick, they may have to leave the workforce, start getting disability checks from the government or declare themselves as unemployed.

Personally, I feel like the quality of life arguments should be enough to tug at the heart strings of members of Congress but if not I am happy to make arguments that tug on the purse strings, and those arguments happen to quite plentiful.

I found overwhelming support for the Celiac Awareness Month Resolution. The staff aides asked me several follow up questions and even asked me for my contact information so they could get more information for their Senator on this issue.

The Kennedy Caucus Room

I had such a wonderful time. Not only did I meet great people, true champions for their causes, but I got to spend time with NFCA and CDF as well as eat amazing food. I know the food is the least important part of the day but I have to admit it really was amazing to see gluten free accommodations made so efficiently and without error. The luncheon held in the Kennedy Caucus Room was a sandwich buffet that had gluten free and gluten-containing options but avoided cross contamination by separating and labeling the types of bread and providing condiments in packets instead of a common serving bowl and a knife to spread onto the bread.

The people I met today were so inspiring because many of them are patients who came out to represent the needs of people living with their conditions. These are people who took off work in order to promote a good cause, people who were willing to put themselves on the spot and speak to members of Congress about very personal matters. I have always said how much I love the gluten free community because it is such a supportive, connected and united group of people but what I didn’t know is that we have a host of brothers and sisters out there living with digestive diseases who are fighting the same battles for quality of life. I’m proud to be gluten free and proud to be a part of DDNC!

As the nation reviews the employment, or rather unemployment, data from December 2012, I too feel inclined to take a look at some numbers. CC Gluten Freed had a fantastic year when quantified in terms of hits and viewer traffic! Now, asking a blogger for the number of hits per year/day/whatever is similar to asking a woman her age: it is simply impolite. I will happily reveal some of my aggregate data and post CC Gluten Freed’s top hits of 2012! Just as NPR reviews the best podcasts, I will be reviewing my top posts of this year for you to share with friends or just enjoy for a second read through.

This post offers advice for taking mainstream cooking classes while being gluten free. The cooking classes advertised as “gluten free” are usually special courses offered sporadically at cooking schools, local markets and local stores. Gluten free people need to be able to cook for themselves since restaurants always pose a risk and bringing a dish to dinner parties is always a must. How are we supposed to become master cooks when the only classes we attend teach gluten free baking and/or are hyper-specific classes eg a specific type of cuisine.

Remember when Domino’s thought they were being gluten free? This post looks at the situation critically and examines both sides of the issue: was Domino’s position on gluten free pizza a valid one? Spoiler alert! I conclude that it was an absolutely abhorrent decision on Domino’s part.

In this post I applaud the NFCA for making sure that Domino’s did not falsely advertise their pizza. GREAT Kitchens was able to evaluate the kitchen practices that Domino’s intended to implement and concluded that their kitchen practices are not safe for Celiacs.

The third favorite of 2012 is “The Importance of Letters.” I am glad that this post ranked so high in terms of traffic because this was one of my founding pieces for CC Gluten Freed. The whole idea behind this blog is to spread awareness and teach my readers how to advocate for themselves and other people living with Celiac Disease. This post discusses the what, when, where, why and how of writing letters to restaurants about gluten free customer experiences.

I am also glad that this post had so many views because it is a great resource for people who are gluten free but are still feeling symptomatic. In some cases, people let bits of gluten slip into their diet from some unexpected sources! This post looks at five foods that a lot of gluten free people continue to eat even though they shouldn’t.

Coming in at #5 we have my recipe for cucumber mint quinoa! This recipe is absolutely delicious! It is a great dish to serve in the summer time because it is filling yet refreshing. I include little changes you can make to this recipe to keep things interesting. You can use this versatile recipe in so many contexts.

One tip: the Quinoa dish is perfect for bringing to a dinner party as a gift for the host. It is filling enough so that if there isn’t anything you can eat your plate will still be full (as well as your stomach) but the dish is light enough that it won’t steal the show from whatever main entree your dinner host is serving.

The election is right around the corner! Make sure your vote is an informed one!

Although the issue of food policy was under highlighted in the Presidential debates, it is nonetheless of political importance. From the farm bill, which impacts the cost and availability of food, to USDA public health promotional campaigns, to FDA food regulations, there are many avenues US leadership can take to change the way we access food in this country.

So what are the issues that a savvy Celiac should consider before casting their vote? The farm bill, food safety programs and access to and promotion of nutritional foods are the key issues that I want to explore so that I can make an informed decision at the polls.

This post is not an endorsement of either candidate.

FARM BILL

The farm bill impacts a population much broader than US farmers. When (or should I say if?) the farm bill is passed it will impact the cost of food as well as our access to certain foods. The next President will not only have to deal with getting the farm bill passed but will also play a role in shaping it.

As someone who is gluten free, the availability of gluten free food is a very important issue. Since gluten free foods tend to be more expensive than products made with wheat flour it would be in our best interest to support policies that make farming more economical, especially for small farmers. Here is the catch: the farm bill attempts to support all farmers, making all food more accessible and affordable. Cheaper brown rice would be great but if wheat flour is also made more accessible and even more affordable than it already is we are likely to see some unintended consequences.

If wheat flour is made more expensive don’t you think that restaurants might think twice about dredging their meats in flour? They might consider using an alternative like cornmeal or rice flour. Cost and accessibility shape our food options both at the market and when dining out.

The President has repeatedly articulated the importance of passing a farm bill this year. He calls for adequate protection of American farmers from draught and natural disasters and promotes diverse, specialty crops like fruits, nuts and veggies (which is great for us!).

Romney has taken jabs at Obama during the campaign about his failure to get the House the pass the bill. Romney thinks that Obama does not have the leadership skills necessary to get a bill passed. He argued that “[P]eople have been waiting a long time for a farm bill. And the president has to exert the kind of presidential leadership it takes to get the House and the Senate together and actually pass a farm bill.”

Romney supports disaster relief as well but also indirectly supports subsidizing American farmers. Romney says that other nations subsidize their farmers and if the US is to compete we will need to do the same.

When you get down into the nitty-gritty of both candidates’ farm bill positions there are more similarities than differences. Both candidates will cut about $30 billion out of agricultural spending by eliminating many of the subsidies that currently go to crop insurance companies. Much of the farm bill is allocated towards food stamps. Here lies the biggest difference between an Obama supported farm bill and a Romney supported bill: Romney/Ryan support decreasing the amount of people using food stamps. They said that they don’t need to cut the program to reach their goal. Romney said, “I want to make sure we get people off food stamps, not by cutting the program but by getting them good jobs.”

FOOD SAFETY

President Obama created several programs that promote food safety. He established the Food Safety Working Group, which is a group that focuses on updating and improving US food safety systems. Obama also increased the authority of the FDA so they can more effectively enforce food safety regulations.

Although Romney believes in the importance of access to safe foods his approach to securing such food is very different from Obama’s approach.

Romney supports a more hands off approach to preventing food-borne illnesses. He argues that “preventative practices” are the best way to prevent outbreaks. These practices/protocol would be developed by the private sector because Romney believes that the people in the fields are the best equipped to handle this issue. Romney’s campaign states that it is most cost efficient and effective to allow food growers, handlers and processors to create food safety protocol. As for the role of the FDA, Romney’s campaign said that the Romney Administration would prioritize collaboration between the FDA and the private farm sector on this issue.

NUTRITION

The Obama family is very committed to promoting healthful food choices in schools and encouraging people of all ages to lead active lifestyles. Michelle Obama worked to get more salad bars into schools, President Obama supported the USDA’s new food pyramid, MyPlate as well as their Fresh Fruit and Vegetables Snack Program and both of the Obamas encourage cities to get involved with the Let’s Move! program which provides local towns and cities with tools to get community members exercising. President Obama believes that partnering with the private sector and supporting federal programs to promote healthful lifestyles is the best way to improve the health of the public.

Romney does not support nanny-laws and is committed to making sure the federal government does not overstep its role in American lives. These beliefs about the role of the government shape Romney’s strategies for tackling public health.

In response to questions about promoting nutrition the Romney campaign gave a quick and short response:

“The federal government should not dictate what every American eats… An emphasis on a balanced diet will be crucial to addressing this crisis and public health programs in a Romney Administration will highlight the importance of healthy eating.”

Romney and his campaign have not articulated a plan nor a specific commitment to promoting nutrition and healthful lifestyle choices.

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Now that we know where each candidate stands on these issues the next question is “Does it matter?” As someone who studied Public Health it greatly matters to me but this post isn’t about public health (in general) it is about whether or not being gluten free should impact the way you vote.

The answer is: probably not. The gluten free diet, though more popular and well-known than ever before, is far from the norm. A farm bill that cuts the profitability of wheat farmers is not going to change the fact that people love their gluten. It is an ingredient that has dominated palates across continents. Although I do believe it is important for voters to take the issues I described above into consideration when casting their vote, I do not think that our gluten free fate is in the hands of the future President.

Ultimately, it comes down to constant vigilance, commitment and willingness to speak up for your needs. There is no quick-fix solution to the lack of awareness about gluten intolerance, Celiacs and food allergies in this country but every time you explain it to a waiter at a local restaurant or to a new acquaintance you are making a difference. It isn’t just about being gluten free! I am talking about spreading awareness about restricted diets and cross contamination, issues that make the lives of millions so challenging in the US. Not many people can say that when they dine out they help change the world but we can.

Up until very recently my GF expectations have been low. I did not consider it reasonable that all people should know what gluten is. I did not feel that I was due a gluten free meal at catered or work events. I did not think it was necessary that people put in extra effort to accommodate my dietary needs when I could always work my way around it on my own. I expected people to be accepting of the fact that I might bring my own dinner to a catered event but I did not expect the event to accommodate me. Even though precedent dictates that people with alternative diets should be accommodated (look at how mainstream providing vegetarian options has become), for some reason, to my shame, I did not hold those same high expectations for myself or my gluten free community.

Now, my expectations have changed.

I realized that my expectations were being shaped by experience and patterns and not based on what is reasonable, due or necessary. It took sustained positive experiences to break the pattern of my experiences with food to adjust my expectations.

I was recently accepted into Teach For America, a nonprofit organization that seeks to close the achievement gap in the United States. In order to begin teaching in the Fall I needed to complete a six week training program. The catch? Room and board were to be provided. Most people rejoice at the news that they get free room and board for six weeks but as someone with Celiac Disease, I expected nothing but trouble. My experience with Teach For America (TFA) has changed my expectations for the better. Check out what happened:

The room and board arrangements at Temple University for close to 1,000 corps members and staff members were made by my new organization Teach For America. Although Temple University already had the infrastructure in place to accommodate people on the gluten free diet, it would not have been operational during the summer without the insistence of Teach For America. The fact that TFA went out of their way to communicate with the dining hall specifically about GF options is pretty astounding for several reasons:

1. TFA was accommodating close to 1,000 people’s needs. They made accommodations for vegetarian diets, Kosher diets, vegan diets, rooming issues due to disabilities and many more issues. There were so many needs and people to accommodate. I was so pleased that the Celiacs did not fall through the cracks.

2. TFA had to coordinate with twelve public schools in Philadelphia, finding summer teaching jobs for 800 corp members. This took much time and effort due to sheer mass of teachers, schools and students. Add in the complicated and ever-twisting bureaucratic channels that TFA had to navigate and I think we can consider the GF accommodations close to a miracle.

Temple designated GF toaster with my Udi’s bagel warming up.

Temple’s GF zone — the GF food options are located in a designated “gluten-free/Kosher zone.” It remains unclear to me why you would combine the Kosher and GF options but…what can you do!

Temple’s GF microwave — Temple had many frozen GF products stored in a freezer in the GF zone.

I was very impressed with Temple’s gluten free infrastructure. Don’t get me wrong, it wasn’t perfect. The food was bland and unhealthful but that wasn’t because it was GF. It was college cafeteria food! In addition to the GF zone and availability of GF products the dining hall provided all TFA corps members with bagged lunch. The people with restricted diets (ranging from GF to Kosher to Peanut Free) would pick up their lunches in a separate, designated area. Each food item (entrée, sides, snacks and drinks) was labeled with the person’s name and dietary restriction. Mine read: Cecilia Bonaduce — Gluten Free

In addition to the five weeks at Temple I spent one week in Washington DC at the Sheraton Four Points Hotel. The accommodations there were even more impressive than at Temple. The hotel served breakfast sandwiches every morning for the Teach For America people but at the end of the buffet line there were individually packaged and labeled GF breakfasts consisting of bacon, eggs and fruit. When they served Italian food for lunch they had a labeled and separate area with GF pasta and sauce. Though the salad had croutons mixed in it took nothing more than a simple request to one of the waiters to receive a fresh crouton-free salad.

This was my absolute favorite food moment:

The hotel provided bagged lunch and instead of a wilted, undressed salad or a couple of carrot sticks (my old expectations for an “accommodation.”) I opened my brown bag to find a brown rice wrap. Real food!

After this experience I realized that even if you are going to a catered event with 1,000 people like I did this summer we should be accommodated. I have officially raised my expectations. I am hoping for a Pygmalion effect of sorts in which my high expectations will yield positive results in terms of promoting awareness and making accommodations for gluten free people as reasonable, due and necessary as providing options for vegetarians has become in recent years.

It is time that you, just like me, adjust your expectations in order to protect your health and well-being. I used to hold low expectations because I did not think that GF accommodations were possible. I am telling you now that I am positive that it is possible. I witnessed such accommodations this summer and I hope to continue to experience such positive and inclusive events. Furthermore, in the event that accommodations are not met, I will be holding myself to higher expectations as well. I expect myself to be an advocate, to speak up and to stand up for what I believe is reasonable, due and necessary.

Domino’s Pizza was founded in 1960 in Ann Arbor, Michigan. Today, it is the second-largest pizza chain in the United States (second to Pizza Hut) and has more than 9,000 established franchised stores in the world. An incorporation with a successful foothold in 60 countries has a lot of power over the pizza industry’s reputation and the expectations of consumers with respect to the quality of service that a reputable pizza store should meet.

Domino’s has a history of being the first of its industry to adapt certain unique marketing techniques. For example, in 1973 Domino’s started advertising their 30-minute guarantee to customers. If Domino’s couldn’t deliver the pizza within 30 minutes of ordering, your pizza was free. In the 1980s the offer went from a free pizza to $3 off due to liability issues. Consumers began to speak out about the dangers of the 30-minute guarantee, expressing that it caused the delivery people to engage in unsafe driving. Eventually the 30-minute guarantee advertising campaign was dropped due to political and legal pressures.

What does this history have to do with the new gluten-free pizza crust? Domino’s has a history of being pizza pioneers when it comes to advertising. Ironically, the marketing campaigns employed by Domino’s seem to have a domino effect: once Domino’s does it, all of the other chains begin to follow suit. If history is to repeat itself, I wouldn’t be surprised if more pizza chains not only start offering gluten-free crusts but also follow Domino’s lead with regard to how they offer this new product.

Domino’s Gluten Free Pizza

As most people in the GF and celiac community know, Domino’s started offering a gluten-free pizza crust on May 7, 2012. Ironically announced during Celiac Awareness Month, the company explicitly stated that this gluten-free pizza is not designed for people with celiac disease. The pizza crust, in a vacuum, is gluten-free. What is the catch? Domino’s hasn’t taken any of the necessary precautions to prevent cross-contamination. In fact, on their website they state “While the Gluten-Free Crust is certified to be free of gluten, the pizza made with the Gluten-Free Crust use the same ingredients and utensils as all of our other pizzas.”

Here is a video that Domino’s made to help get the word out about their new product.

Their advertisement for gluten-free crust starts off by saying “Because we are honest people, here is a disclaimer.” For the record, a more accurate beginning to their disclaimer would state “Because we are lazy people, here is a disclaimer.” It would simply take a bit more education, training and effort to provide a fairly safe gluten-free option. At the end of the video ad you hear the narrator saying “Ok, enough already with the disclaimers we are really excited to tell you about our new gluten-free crust…” Not only is the crust not actually gluten-free but Domino’s goes so far as to dismiss their disclaimer as if it is an irrelevant formality

Issue #1: Gluten Free Labeling Laws

The FDA is close to formally establishing the legal requirements necessary to label a product as gluten free. Despite being on the books as an issue needing regulation for several years, the FDA has failed to respond to public pressure until now. The FDA only regulates food products but I wonder why the government recognizes that products should be regulated for the gluten-free status but not restaurants that offer similar products.

Government entities like the USDA and FDA protect the US population by regulating highly distributed, manufactured and agricultural food products. This is important to prevent public health catastrophes related to contaminated food products.

In general, it would not make sense to allocate government resources for regulating restaurants on a federal level because, in the past, if a restaurant had contaminated products or unsafe practices it wouldn’t affect enough people for it to be considered a federal issue. Unfortunately, in the world of chains and franchises, the idea that restaurants only impact their immediate surroundings is no longer true.

In this context we are talking about a pizza company that is located in every single state in this country with over 5,000 individual restaurant locations. The kitchen ingredients used by Domino’s can affect a large part of the US population and, more relevantly, their institutionalized kitchen protocol can affect people on a population level as well.

If Domino’s wants to offer a gluten free crust they should be subject to some form of regulation since their product is so wide-reaching. If Domino’s had a kitchen protocol that had all their chains set the ovens to a temperature that consistently undercooked meat, resulting in food poisoning, we would have a national health crisis on our hands. I don’t know why we are turning a blind eye when it comes to gluten free protocol in the kitchen.

Furthermore, calling their pizza “gluten free” should be considered false advertisement, if not fraud. Their appeal to the gluten free market is abhorrent. The gluten-free market base is depression-proof and has been consistently and substantially growing for the past 10 years. You should not be able to con your way into this market. If you take a chicken breast and dredge it lightly in flour before frying it, is this entree gluten free? NO. Is the chicken breast itself gluten free? YES. Similarly, if you have a gluten free pizza crust it is no longer gluten free if you cross-contaminate by preparing it in an environment covered in gluten-based flour (similar to a light dredging, if you will).

Issue #2 Corporate Precent

One of the main reasons that I find Domino’s actions completely unacceptable is because of, what I am calling, corporate precedent. California Pizza Kitchen started offering a gluten free pizza crust before doing their homework. They developed a crust but did not research cross-contamination protocol. As a result, customers complained. Did CPK slap a disclaimer on their menu and call it a day? No. CPK pulled the pizza from their menu and started working with the Gluten Intolerance Group to develop a strategy to make their kitchen safe for gluten-free pizza cooking. Domino’s justifies their lack of concern for cross-contamination by saying that the crust is for gluten intolerant or gluten sensitive consumers. Interestingly, although Domino’s argued that they are catering towards the gluten sensitive population, the Gluten Intolerance Group is the organization that stepped up to help CPK prevent cross contamination. I really enjoyed this post by Linda who points out that, of all the gluten sensitive people she knows, none of them have “mild” senstiives” and they do not appreciate a contaminated pizza!

Domino’s has stated that they simply don’t have the kitchen capacity to make a truly gluten free pizza. It seems reasonable that it might be hard to make a profit if they had to change their kitchen set up for this product. Then I remember PF Changs, a nationally represented corporate restaurant chain that has successfully created a gluten free menu and has changed their kitchen set up to accommodate safe food preparation.

Before Domino’s the precedents set by various corporations trying to go gluten free have been in favor of trying to prevent cross-contamination. I fear for the gluten free future of the restaurant industry now that such a large and financially successful company has started saying that it is ok to take the easy way out.

The Bigger Picture

Supply and demand: a fundamental concept in economics. If consumers demand a certain product, the market will supply it. What happens when the supply and demand get muddled and confused? Poor products. In response to perceived consumer demands restaurants and food companies are responding by creating “gluten-free” products. The problem is that the market is not understanding the true nature of the current demand.

Supply is not the issue right now. There are so many gluten free products on the market. If current product supply were the issue I would pick up some frozen pizza crusts at Whole Foods, go to Domino’s and ask them to heat it up for me. What is in need, the demand, is education and awareness. I don’t need Domino’s to create and produce a tasty recipe for a pizza crust. Udi’s, among other companies, has awesome pizza crust already. What we need is a safe place to dine out

Empowerment

I want to remind my readers that CPK stopped offering their gluten free pizza until they could establish a safe kitchen environment in response to a letter by a customer. If you want Domino’s to take accountability then send them a letter (or write them an email) explaining why taking the gluten-free pizza one step further could make a huge difference in your life and in the lives of many other people with celiac disease or gluten sensitivity.

Ultimately, if we want to change the market then we need to change the nature and clarity of our “demand.” The first step to this change? Advocate for yourself.

A note about NFCA

Check out their letter from Alice Bast discussing their involvement with Domino’s Pizza. NFCA has taken a lot of heat for seemingly endorsing Domino’s. Domino’s reached out to NFCA to consult about their new gluten free product. NFCA informed Domino’s that the pizza is not safe for Celiacs and reviewed their ingredient lists and kitchen practices to draw this conclusion. Although the Amber designation is fairly controversial, it is better than Domino’s advertising their pizza as gluten free without a disclaimer. Check out this post by Linda from theglutenfreehomemaker.com about why the amber designation may be a huge step back for the Celiac Community. Without NFCA Domino’s might have simply not let consumers know about the serious cross contamination risks.

What a successful conference! I am sure all who attended will agree that the day of feasting and learning could not have been better. The Celiac Disease Foundation pulled out all the stops for this year’s Annual Education Conference and Food Faire.

I had a table promoting CC Gluten Freed and got some great feedback from the gluten free community. I am so pleased to report that many people have found the site very helpful and even inspiring!

I was lucky enough to be considered a speaker at an event where such prominent figures as Dr. Stefano Guandalini of University of Chicago Celiac Disease Center, Dr. Peter Green of Columbia University Celiac Disease Center and Dr. Gregory Harmon of the UCLA Celiac Disease Center were speaking. I lead the Young Adult, Teen and Tween session, designing activities and giving a speech about the surprising social benefits of being gluten free, a silver lining, if you will. At the end of the session I raffled off three Kraft Mac N’s Cheese Powder bottles! This is one of the only foods I have not found a perfect GF substitute for. I quested for the powder (sold separately from the glutinous pasta) for days and days and am so glad I found it. You should have seen the kids’ faces when they won the ingredients for the best Mac N’ Cheese in US history.

In addition to the great speakers and educational lectures at this event, attendees had access to over a hundred food vendors providing samples of delicious GF products. I, personally, could not help but go back for a second serving of pizza at the Udi’s table!

I learned a lot not only from the speakers but from the gf people who stopped by my table. For example, I met a ton of people who were diagnosed with Celiacs only after their children or grandchildren were diagnosed! I wonder if this is because of the involvement of parents in children’s health, the quality of pediatric care in the US compared to adult care or if there is some other explanation! I also received a lot for requests to purchase CC Gluten Freed wristbands for family members, support groups or gluten free clubs and organizations. In response, I have made the bracelets available here! I, personally, always wear 3 of them so I can give them away if I meet a GF person on the road! The bracelets are very fun and meaningful. Check out the meaning behind OWN IT.

For those of you who are just joining ccglutenfreed.com after meeting me at the conference: WELCOME! I hope you enjoy the blog. I had such a great time at the conference. It was a day I will never forget.

drawing a crowd at the CC Gluten Freed table!

CC Gluten Freed was located next to the University of Chicago Celiac Disease Center table!